Archive for the ‘Kids’ Category

Defining Me

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Today on the radio, the dj quoted someone declaring proudly: Don’t let your past define you. And the other djs cheered and encouraged the thought and the adage.

It’s a common cheer these days. It catches on quickly and people agree wholeheartedly as they celebrate the fact that they can rise above a horrible experience and still be a good, happy person despite a troubled past.

While I get the sentiment of keeping on keeping on and pulling yourself up by your bootstraps and not letting a bad experience defeat you or derail your life, I have to disagree.

My past definitely defines me. I cannot separate myself from it. I am who I am because of my past. The good, the bad, the hard, the joyous. The people, the experiences, the betrayals, the victories, the losses. The scars, the bumps, the bruises. The hugs, the friendships, the apologies or lack of apologies, the pain. The stories, the pictures, the experiences, the trials. They define me. They made me who I am today.

My past helps guide my actions, my passions, my purpose, and my future.

My past goes everywhere with me, whether it’s welcome or not. My traumas, my fears, my victories. I cannot separate from it. It’s my story.

My past is why I am even at this table, in these circles, in these conversations, championing these causes.

My past is what gives me my context and my story. It was me who lived it; it was me who experienced it. It is me who survived to talk about it and to help others with it.

My past is why I have a dog in certain fights. It’s why I have the soapboxes I have. It’s why I have the platforms I have.

Those people and experiences that hurt me… they formed me. Those people and experiences that helped me… they formed me.

I am who I am today because of the things and people I’ve experienced.

So, yes, I will continue to rise above the trauma. I will try to heal up any open wounds. I will work to be the absolute best version of myself despite my past and my scars… and I will work to be the absolute best version of myself because of my past and my scars.

And I will continue to let my past define me.

Around Us

92804AAD-2183-4D02-9ABF-39CCFC814092We entered the building and walked across the lobby to the elevator. Two little boys sat with their mom over to the side. When the oldest of the two spotted Chloe, he called out excited, “I love your wheelchair!”

As we stopped to say thanks, he dashed over, dropped to the floor beside the wheelchair, and announced, “This is my favorite part!” as he touched the small light-up caster wheels of Chloe’s chair.

“Oh, yes! That’s my favorite part, too!” I said.

It’s sad that this 5 second interaction had such an impact on me as Chloe’s mom, and there are a couple of reasons why it’s important.

First, the young boy was comfortable with Chloe’s wheelchair. This child obviously lives a life in which he is exposed to people with disabilities and people who use wheelchairs. I know this because I see the opposite in children all of the time. The children who are not accustomed to being around people with disabilities or people with wheelchairs are the ones who stare in amazement the whole time Chloe is in their line of vision. The children who don’t see many wheelchair users would never approach a child in a chair, much less touch the chair. But this young boy was comfortable.

Second, the child’s mom was comfortable with Chloe’s wheelchair. She didn’t screech for the young boy to be quiet or not to touch. She didn’t cower in fear or whisper or act uncomfortably. This young mama and her children were 100% comfortable with Chloe’s wheelchair. I venture to say that this family is friends with someone who uses a wheelchair. They were just that comfortable.

The only way to be friends with someone who uses a wheelchair is to be around wheelchair users. In the same vein, the only way to be friends with someone who has a disability is to be around people who have disabilities.

As long as schools and communities keep people and children segregated according to disability labels, children and adults will stare at Chloe when they see her. But when children and adults are around people with disabilities in natural environments (classrooms, playgrounds, churches, and clubs), then those people will be comfortable being friends and being friendly to Chloe. And when children and adults do life together– learning, playing, and contributing together– then those children and adults will be comfortable approaching Chloe and will see her as an equal.

A takeaway: If you notice your child staring at someone because of their disability or because of a device that supports them, please don’t tell them not to stare. Instead, approach the person with a disability, introduce yourself, and say hello, setting a good example for your child. And then seriously evaluate your life and your child’s life and deliberately make some changes that will cause your family to be in contact with people with disabilities. We have lived segregated lives for too long. We have tolerated segregated classrooms long enough. Help be the change.

A few minutes after arriving upstairs to our appointment that day, that same young family walked into the doctor’s office. Reiterating just how similar our families are, the mama said to her two young boys, “Yay! We have the very same doctor as she does!”

Be like that mom. Be around us.

 

Poof!

CCB87ABC-2C64-449A-A09E-7187220A61C6.jpegOn the way to take Zippy to school today, he was in a playful mood. He jokingly pushed my buttons the whole drive. He messed with the radio, turning it back up after I turned it down, etc. He thought he was really funny.

Each time, I would turn off the radio for a few minutes as “punishment.” Then, through smiles and laughter, we would talk about obedience and respect and then we’d turn the radio back on for another chance. But over and over, we would end up with the radio off for punishment, and wails and laughter would ensue.

When we pulled up at the school to drop Zippy off, the radio was off; and no matter how much he begged, I wouldn’t let him turn it back on. No more chances. So, laughing, he got out of the car and shut the door.

As he walked by Chloe’s closed window, Chloe used both hands as if releasing a spell and said, “Poof!”

And I died.

She literally just Poofed Zippy, pretending to turn him into a goon just like the Good Fairy in Little Bunny Foo Foo! “I gave you 3 chances, and you didn’t obey so I’m turning you into a goon! Poof!!”

  1. What a great little sister!
  2. What a great sense of humor!
  3. What a smart way to apply a story to real life!
  4. Way to make my entire day! LOL
(For reference, in case you don’t know the song: https://www.youtube.com/watch?v=yTqVltEy4JY)

Be the One

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Be the one.

Be the one who holds her hand. Be the one who dances to her music. Be the one who stops and joins her in her dance. Be the one who looks her in the eyes and smiles. Be the one who stands with her holding her hands while others look on. Be the one who is her friend.

Because when you are that one, others will see that it’s okay to hold hands. Others will see that it’s okay to dance. Others will see that it’s okay to stop what they’re doing and join in her dance. When you are that one, you will empower others to come and join in her song and look into her eyes and smile and be her friend.

Be the one. And teach your children to be the one.

Be the one. Because the one encourages others.

And the world needs others. And my girl needs others. 

Thank you for being the one, Sophia. ❤

 

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Give it Over

Last night I finally crawled into bed a little before midnight. My bed had been calling my name for several hours, and I was ready to crash into a deep sleep.

However, Elliot, my 20-year-son, was driving from the football game to his friend’s house for the night. He wouldn’t arrive at his destination for at least another hour and a half.

My mama heart felt the need to know when he had made it safely. My mama heart willed my eyes to stay open and close to my phone incase he needed me.

I dozed several times but was literally waking every 10 minutes and checking my phone.

Finally after an hour or so of this dozing off / startling awake again pattern, I realized it was futile and silly. And, as I’ve done countless times over the last 20 years, I handed my boy back over to God … he’s His anyway, right? I verbally and mentally handed Elliot and his safety and his wellbeing back over into the hands of the One who is in charge, into the hands of the One Who actually loves Elliot more than I do. I handed him back over into very capable hands.

He’s Yours, God. I give him to You again.

And I fell back asleep, resting for several hours before waking again to check my phone. He had made it to his destination sometime while I slept.

Funny that I have to keep reminding myself to trust my children to God. He’s got them. And He is working for their good. Always.

So I can sleep, knowing they’re His.

Sigh. Zzzzzzzzzzzz.

Whose Mess??

“Family meeting!” I yelled. “Everyone  come to the kitchen!”

As my three teens gathered around me, I asked, “WHO made the mess with the coffee grounds??”

Someone had removed the lid of the coffee grounds container and made a mess with the grounds on the counter and on the floor.

“Not me!”

“Not me!”

”Not me!” chimed my kid’s one-by-one.

But then I notice a clue… and I know who made the mess.

You little stinker…

Can We Talk About Hugging?

It’s something that comes up over and over and over again in the world of disability and special education.

The hot topic: hugging.

Seriously.

At some point in the history of special education/ special programs, someone decided that it was inappropriate for a person with a disability to greet people with a hug. And they set out to eradicate the practice of hugging altogether for those individuals who present with a disability or other social difficulties.

The argument is that it’s inappropriate. We should replace it with a more accepted practice of handshakes, fist bumps, or high fives.

If you are reading this blog and thinking I’m making this stuff up, then you either don’t have a child with a disability or your child is still young enough to have not started hugging yet or still young enough that the powers that be deem it still age-appropriate. But I assure you, this popular and ultra-important mandate in the world of special education is a real thing and at some point you will discover the truth that this vendetta against hugging is regarded in a much higher level of importance than even most academic skills. Really and truly. Just wait.

If I had a dollar for every time an aide, teacher, diagnostician, or other professional addressed this issue with me, I’d be able to afford a huge social media campaign to change the world’s view on this topic.

Can I just state a fact?

Hugging is an appropriate greeting for a girl.

And I’m going to get crazy here and add that it’s also an appropriate greeting for a boy.

I can already hear the gasps of the special education professionals in the room. It’s okay. I’ve made them gasp before. And there are plenty of those professionals whom I love dearly, and they know I’m nothing if not an honest, state-it-like-it-is mama. And, perhaps surprisingly, most of them respect and appreciate me for it.

So, yes, hugging is an appropriate greeting.

My daughter is a hugger. It’s who she is. It’s what she does. I cannot tell you the number of times I’ve heard someone tell her that they love her hugs. Many a person has been blessed by Chloe’s hugs. Some might go so far as to say it’s part of her gifting… blessing others with a hug.

And there have been plenty of people in Chloe’s 17 years who have made it their goal to break her of it. Some have even tried to incorporate it into IEP goals. (Again, folks, no hard feelings to those who have tried to eradicate Chloe’s hugging. I recognize they were only acting on what they had been taught to believe was important and appropriate. I believe they all had the best of intentions, and most of them LOVED my kid.)

But, no. We aren’t gonna do that.

Let me ask you a question. A couple of questions.

When was the last time you saw a teenage girl walk up to a circle of her friends and offer a handshake to each of them as a greeting? Mmmmmm, yeah, it’s been a while, hasn’t it? Teenage girls don’t do that. I’m guessing her friends would think she was a weirdo actually.

Let’s remove the wheelchair and the need for additional adult support from this situation… if a typical teenager hugged her friends or her favorite teacher everyday, would you think it was inappropriate and vow to eradicate the behavior? I’m guessing not. It’s totally appropriate for a teenage girl to greet people with a hug. I see them do it all the time. (Clarification: I, of course, recognize that some “hugs” are more than hugs, but I’m not at all talking about lap-dance style hugging…. That’s another topic for someone else’s blog. I’m talking about a quick, friendly hug of greeting.)

So how does Chloe’s disability suddenly make hugging inappropriate? Let me answer that for you. It doesn’t.

Instead of trying to eradicate the hugging nature of my child and so many others, let’s try a new approach.

If there’s a teacher who doesn’t want to hug, let’s have that teacher advocate for herself/ himself and tell Chloe, “No thanks. Let’s shake hands.”

If there’s a student who doesn’t want a hug, let’s teach THAT STUDENT that he/ she can say, “No.”

Aren’t we currently teaching people/ children to speak up and advocate for themselves and SAY NO to things they don’t like? Perfect. Let’s do that here. Let’s have the expectation that people can and will advocate for themselves when taught to do so.

And let’s leave the huggers alone. Let the huggers hug.

Not changing my girl for the world; changing the world for my girl.

The Song

As our departure date for family camp in Alabama drew near, we received weekly update emails from Hope Heals Camp detailing more information about what to expect.

Two or three weeks before camp, the email mentioned a talent show. I immediately knew Chloe would be interested in playing a song for the talent show.

Chloe and I have nearly daily “instrument parties” in her bedroom. Usually she plays cello, her main instrument, while I play ukulele. However, we sometimes switch it up and one of us plays keyboard, or she plays accordion or recorder or harmonica. She would literally play instruments 24/7 if she had her way.

It was highly impractical to take her cello to family camp: The camp was a 12 hour drive away from our home in Ft. Worth, Texas; the cello is quite expensive and fragile and our car would be quite packed with the necessities of camp; and we couldn’t leave the cello in the heat of the car when we stopped at restaurants or other stops.  For those reasons, Chloe decided she would instead play keyboard at the talent show (even though she would’ve much rather played cello).

She and I have a book of 365 songs for ukulele. The book has a great selection of a wide variety of songs. Chloe can read music but prefers to play by ear … and does so very well. I, on the other hand, cannot at all play by ear so I’m very dependent on the book for the songs that we play each day. I told her she could choose any song from the book for us to play at the talent show. Out of 365 songs, she decided we would play Edelweiss.  While I love Edelweiss and think it sounds beautiful when she plays it on her cello, I tried to talk her out of it.

“No one knows that song anymore.” I tried.

“Maybe we should play something upbeat instead…” I suggested.

But she wouldn’t be swayed. Edelweiss it would be.

Fast forward to the first night of Hope Heals Camp. All the campers, volunteers, and staff mingled around the camp fire singing camp songs. At the end of the night, Jay stood up and announced it was time for our Goodnight Song. He explained that it was tradition for everyone at camp to sing the Goodnight Song everynight before bed. It was a special song to Katherine and had become special to Hope Heals Camp. And then he led us in the Goodnight Song… to the tune of no other than… Edelweiss.

It was my first chill bumps and tears of the week. As Jay described it, it was a special God Wink that Chloe had chosen to play Edelweiss later that week.

I’m so glad Chloe didn’t listen to me as I tried to convince her to play a different song. She knows what’s up.

(Additional behind-the-scenes story: On the night of the talent show, I left the book of songs in our cabin and didn’t realize it until we were situated on stage ready to play. Total Mom fail! I leaned over to Chloe and explained that she was going to have to play without me because I didn’t have the book. I tried my darndest to play it by ear/ memory, but that’s completely out of my skill set. Our performance did NOT go as planned. Chloe did fine, but she was so shy and hesitant to play her song while I was destroying it on my end. Truly no one at Camp was the wiser because Chloe just reveled in the applause of all of her fans at the end. I apologized profusely for messing up her performance; she’s forgiven me completely.)

#HopeHealsCamp

#HopeHeals

Flooding Tears

I recently visited a local high school with a friend. Her son who has Down syndrome will be a student at this school next year. The transition to high school is a big one. She and her family have been working on this transition for years, fighting the status quo in our state, which is to keep kids with significant disabilities in special classes away from their non disabled peers.

Special classes for kids with disabilities are called self-contained classes. Self-contained as opposed to mingling about and switching teachers, classrooms, and subjects throughout the day. Typically these self-contained students stay in one classroom all day long and receive their instruction from one teacher with the help of several aides. Sometimes the students in these classes are allowed to go to elective classes or lunch with other kids. But for the most part, they are kept hidden away in private classrooms without any interaction with non disabled students.

My friend and I and several other friends of ours have been fighting against this status quo for years. We believe that our children should be educated right alongside peers who do not have disabilities. We believe that the positive peer pressure from being with these students and the friendships with these other students are life-giving and important. We believe that even if our children can’t demonstrate that they are learning everything the other students are learning, they deserve to be exposed to everything the other students are learning. The difference is literally as plain as our children still learning about the calendar and the weather and counting to 30 in high school instead of learning about the Periodic Table or the Cell Cycle. (Disclaimer: perhaps that is a simplified example, but it is true to what I have witnessed and heard about in Texas high schools)

So the other day while visiting this local high school, my friend and I stood talking in the entryway to the school, right outside of the front office. We stood in an active, busy thoroughfare of the main hallway of the school. We watched groups of students filing to lunch and to the library; then we watched students filing from lunch and on to class. The students, of course, came in waves as the passing periods came and went in the middle of the day. I love teenagers so I enjoyed watching them come and go, laughing or joking or cutting up as they went.

But then, surprisingly, when the hallway was quiet since it was not a main passing period, a group of about 8 or 10 students came parading by. A couple of them were holding hands with teachers and being led down the hall. It became clear that this was the special education class. The self-contained class. The kids with disabilities. The hall was empty except for these few students. They didn’t even pass paths with their typical peers during passing periods. They didn’t even see other kids on their way back from lunch. It was just them in the empty hallway.

My friend and I watched silently.

“Oh my gosh,” I finally whispered. It was as though I had been punched in the gut. I could not breathe as I watched them walk by.

And then the tears came. And they came hard.

Now, I am not a crier. I don’t cry. But here, in the entryway of this high school, I started crying. And I couldn’t stop. I think I mostly controlled my heaving breaths that were trying to escape my lungs as I tried to control my tears, but the tears certainly came.

It broke my heart. It made me angry. It made me sad.

And the emotions flooded.

This. This is why we fight. This is why we work so hard to get inclusion for our kids. This is why we help families. This is why we spread the word that inclusive education is important.

I was overwhelmed with the injustice of it all — the injustice that somehow these students were deemed unworthy to be learning with the other students. The realization that without loud, vocal, fighting mamas– this is exactly where our kids would be, separated from the rest of the world, parading down the hall with these students all the way to their private classroom, away from the other students and away from the rich learning taking place in those other classrooms.

And I realized that all the nights I complain about helping Chloe with her difficult homework from her 9th grade biology class or her Algebra I class, I should have been so thankful that she had the opportunity to learn biology and algebra instead of being ushered down the hall away from those subjects. All of those nights of hours of homework with her are worth it!

That hard World Geography semester review that had frustrated me the night before? I was suddenly so very thankful that Chloe and I were able to struggle through it. Because the alternative is no homework, no world geography, and no inclusion.

That parade of students showed me, reminded me, that everything we do and everything we’ve done has a purpose and it’s all worthwhile. All the fighting, all the work, all the rocking of the boat and questioning the norm has a purpose. We are fighting so that our children won’t be a part of that parade that passes by after all the other kids are in class. We are fighting so that our children can learn everything that the other kids are learning. We are fighting so that when a friend mentions their 3-D cell project or the Periodic Table, our children will know what the heck they’re talking about.

Yes, the tears came. And, yes, it was awkward and embarrassing. But the tears and the emotion were strong enough to remind me of the importance of our fight. The emotion reminded me why we speak up. And the emotion reminded me what we’re fighting for and what we’re fighting against.

I believe that my kids have the right to be educated right alongside the other kids. And I believe that ALL KIDS have the right to be educated right alongside the other kids.

I only wish I could help more students. I only wish I could convince more families to fight. I only wish I could stop that private and sad parade going down the hall while the rest of the world is off learning together.

Oh, how I want to change the world. Oh, how I want to change the status quo.

Happy Birthday!

As I recently explained, Chloe has become quite the party animal lately. Everything is a party. All day, everyday, party, party, party.

Another consistent thing in Chloe’s day is the birthday song. It pairs nicely with the whole party scene, don’t you think?

photo source: cliffordgarstang.com

Chloe has a couple of different apps on her ipad that play the birthday song. And the song has been on repeat for months. We sing happy birthday to all of her stuffed animals and all of her babies. We sing happy birthday to the cello, to the Christmas tree, and to the Walmart employee who brings our groceries out to the car. We sing happy birthday to singers who come on the radio, to our dog Flo, and to the sunshine.

There is a routine to the singing of the birthday song. Once the birthday object has been identified, Chloe plays the song on her ipad, we sing the birthday song, hug the lucky birthday object (if possible), and then we always tell him/her/it to have a fun party. It’s a very rigid birthday routine. The routine is greatly loved and very carefully carried out multiple times each day. If there happens to be something handy that can stand in as birthday candles, then we add blowing out the candles to the birthday song routine, too. Sometimes there are even gifts exchanged.

So fair warning, if you run into us somewhere, be prepared to be the birthday boy or girl! And guess what? You can play along with us and pretend it’s your birthday even if it really isn’t. And if you’re lucky, you might get some pretend candles to blow out and a birthday gift to enjoy for a couple of minutes. Don’t worry. Don’t get weirded out. Don’t feel awkward. Just let us celebrate you for a minute. You just might enjoy it. 🙂

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